Image by upklyak on Freepik
This is a guest commentary. The views and opinions of the author may not always represent those of the Centre for Care.
The Three Acts of Dementia
‘’All the world’s a stage, And all the men and women merely players’’ (Shakespeare, Jaques, Act 2 Scene 7)
If Shakespeare’s monologue is so, I believe I could be worthy of a BAFTA nomination, for playing the role of best supporting actress, through three generations of family, suffering dementia. The transition from one to the other has not been seamless. All met with different struggles. As with a play, there have been rest intervals between each act. Dementia has been my shadow as I have journeyed through life, first striking it’s ugly head with my maternal Grandmother. Alzheimer’s Disease was the fate of my late Mother, whilst my husband has Lewy Body Dementia.
Poignant memories emotionally challenge me whenever I think about Grandma. I find difficulty in talking about her without an overwhelming feeling of immense sadness. I felt that pain for her at the time and it has never left me. Both with my late Mother and husband I have been far more pragmatic.
There was not the support network for Carers in the 1960s as we know it today. It was not easy. My Grandmother went to live with my parents. Riding this lonely road alone eventually took it’s toll on my Mother. Her GP stepped in advising her to find a home for Grandma. That was the beginning of the end. I was witness to the cruelty, neglect and lack of care. My Mother moved Grandma to the care of the Nuns, where she was lovingly cared for till she died soon after.
It may come as no surprise it was then I promised myself that should my Mother suffer the same fate, I would care for her at home. But I would do it differently to my Mother. In the flush of youth, not thinking of the cost, I decided I would enlist full time help enabling me to carry out my decision. High flying ideals.
My Father who saw the writing on the wall, correctly assuming he would die before my Mother, moved from the North to the Midlands. His dying wish was that I would care for Mum. My Mother was unhappy away from her beloved Manchester. However, this move of my Father’s was intuitive and wise in allowing for a seamless transition into caring for my Mother.
As luck would have it, just at our time of need, Direct Payments (DP) for Adult Social Care came into being in Birmingham. It was the best thing since sliced bread. What a blessing. DP enabled me to fulfill the promise I made to myself to care for Mum in her own home. However, without my brother with his professional knowledge we would not have had DP. I have no idea how I would have coped. It was my brother who did everything necessary to establish DP for our parents. The Social Workers who should have known, knew nothing about DP for social care for older people.
What a contrast from the lack of support during my Grandmother’s lifetime to the support on offer for my parents. With DP I could buy my own Care. I had the freedom to use the money in the way that worked best for us. DP did not just have to be spent on Care. However, Care was all I wanted. The perfect package did not happen overnight. It took a long time of trial and error before a model of excellence was established by employing the right Carers. I then never looked back.
And now as my husband moves into the last scene, the transition into caring for him has been as different again. Twenty four hour care is the order of the day with no respite whatsoever. It is relentless. For eight months I have been caring unsupported, getting minimal sleep in any twenty four hour period. The six week care package provided on discharge from hospital, because of being extremely busy, I found to be more of a hindrance. It has been a nightmare getting support from Social Services. This was eventually achieved by help from my local councillor.
I erroneously thought my husband would fall into the category for a DP as did my Mother. This has not been the case. One of my Mother’s excellent Carers is waiting in the wings. Her last job finished as I needed a Carer. I am presently awaiting a decision from Social Services. I am merely a player on this lonely stage.
About the author
Terry is part of the Lived Experience Panel at the University of Birmingham.